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Clinical Genetic Research 3: Genetics ELSI (Ethical, Legal, and Social Issues) Research

Protocol
First Online:
Part of the Methods in Molecular Biology book series (MIMB, volume 1281)

Abstract

ELSI (Ethical, Legal, and Social Issues) is a widely used acronym in the bioethics literature that encompasses a broad range of research areas involved in examining the various impacts of science and technology on society. In Canada, GE3LS (Genetics, Ethical, Economic, Environmental, Legal, Social issues) is the term used to describe ELSI studies. It is intentionally more expansive in that GE3LS explicitly brings economic and environmental issues under its purview. ELSI/GE3LS research has become increasingly important in recent years as there has been a greater emphasis on “translational research” that moves genomics from the bench to the clinic. The purpose of this chapter is to outline a range of ELSI-related work that might be conducted as part of a large scale genetics or genomics research project, and to provide some practical insights on how a scientific research team might incorporate a strong and effective ELSI program within its broader research mandate. We begin by describing the historical context of ELSI research and the development of GE3LS research in the Canadian context. We then illustrate how some ELSI research might unfold by outlining a variety of research questions and the various methodologies that might be employed in addressing them in an area of ELSI research that is encompassed under the term “public engagement.” We conclude with some practical pointers about how to build an effective ELSI/GE3LS team and focus within a broader scientific research program.

Key words

Ethical Legal Social issues (ELSI) GE3LS Clinical genetics Mixed methods 
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Copyright information

© Springer Science+Business Media New York 2015

Authors and Affiliations

  1. 1.Division of Community Health and Humanities, Faculty of MedicineMemorial University of NewfoundlandSt. John’sCanada
  2. 2.Eastern HealthMemorial University of NewfoundlandSt. John’sCanada
  3. 3.Clinical Epidemiology, Faculty of MedicineMemorial University of NewfoundlandSt. John’sCanada

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